In May of 1980 I found a small lump on my right breast. Since there was no history (that I knew of) of breast cancer in my family, and I was only 26, I decided to wait. When I finally saw a doctor in July, he said it was probably a cyst and waited a month to see if there was any change. A month later, it was slightly larger; so I had a mammogram (false negative); then a thermogram. The latter came up with something but they didn't know how to read it having just gotten the machine -- this WAS 1980!
I was sent for a needle biopsy which was unsuccessful. I was then scheduled for an incision biospy in September. By this time it was the end of August. Two weeks before the surgery, one of my lumph nodes swelled. Four days before the surgery the tumor went nuts. My breast became hard as a rock; my breast and the surrounding skin became hot, bright red and hurt to the touch. The doctor still didn't think it was cancer; I went into the surgery thinking I had some kind of infection and that I was going to wake up with drains in my breast. Well, I didn't have an infection, I had infiltrating, inflammatory, adenocarcinoma. I remember I was still groggy from the anesthesia when he told me this, and my father was sitting next to me. The secondary tumor was immense, and the cancer had spread locally to my surrounding lumph nodes. The incision was larger than originally planned, because the surgeon kept looking for normal tissue for comparison -- and couldn't find any. I was classified as a Type IV something; I don't remember exactly, but these days it would probably only be classified as a IIIB.
I went to NY to stay with my family, bringing my slides and pathology report with me. My parents took me to a second and third opinion (in three days). The oncologists all gave the same prognosis and said surgery wasn't an option. Being written off like that REALLY angered me and I didn't accept it. Plus bone, lung, and brain scans didn't come up with any evidence of mets.
One week after the surgery, I started on what was a 'new' chemotherapy protocol. I was given adriamycin, 5FU and cytoxin once a month, and what I called a booster shot of 5 FU and cytoxin a week after the adriamycin. The original plan was one cycle of chemo, then the radiation and then, I thought, one more year of chemo. However I went into instananeous remission from the chemo and ended up having three cycles instead of one. Two months of radiation was followed by another 3 cycles of the original chemo. I don't know if it's still true, but back then they thought you could only have so much adriamycin. I only had six cycles of it. Once I had the maximum of adriamycin -- it was replaced by methotrexate.
I wanted to go back to school after the radiation treatments, so the medical center at the University I attended agreed to take care of me. I don't know how they got the drugs for my chemo or my pain medications; even the doctor who attended me was a 'volunteer.' He worked at the school clinic the first year of my treatment, then left to work at the local hospital, but continued seeing me 'unofficially.' And when the clinic said no to his coming over any longer, he trained another doctor to give me the chemo. I went over to his hospital for checkups (early in the morning when 'no one' would know -- actually the only people who didn't know were in billing -- I didn't have any insurance other than student insurance). The advantage of all this, if you can call it that, is that the clinic doctors were unused to seeing someone so sick. There were no good anti nausea medicines back then. After a treatment I would throw up for 24 hours straight (every 15 - 20 minutes). We tried grass once, but after I got stoned I wouldn't take the treatment and kneed the doctor when he came too close (I got really weird on the stuff). The doctors decided the heck with it, and started knocking me out before giving me chemo. Let me tell you -- this is the preferred method to take chemo. I was also in so much pain as the tumors shrunk, that I was put on prednizone for almost three months.
It wasn't until June of 1981 that they couldn't find any more evidence of cancer. That's when it was first said I was in total remission -- though they hesitated to say 'total.' When I went back to the chief oncologist at the NY hospital, at the end of my first year of chemo to ask what happens now -- he told me I get another year. I asked why I wasn't told at the beginning, and he said it was because they didn't think I would live nine months. I almost slugged him.... Anyway, I ended up on chemo for a total of two years. The doctors ignored size, weight and health and gave me the maximum doses allowed for humans. I ended up bald, fat, and with migraines (which I never had before but have had ever since). I have lost some of the weight and after the end of the adriamycin had hair again. Actually I didn't mind being bald back then -- a little baby oil and my head polished up nicely -- wigs itch
The protocal called for me going on tamoxifen when the chemo was over -- but my cancer was ER negative so I refused; something I hope I don't have cause to regret now that I am beginning menopause.
As a nutritional aside, I read up on chemo while ill. Though I had been a vegan before treatment, I became a total junk food addict (which unfortunately I still am). I read 5 FU operates by fooling cells into thinking it's a vitamen b (I forget which one). I thought eating vegies would be counterproductive. I also stopped taking most vitamens, like vitamin C, which act as anti toxidants. Chemo is toxic so I felt I needed to cooperate with the drugs to let them have maximum effect. I also use audio tapes and meditiation to help visualize the drugs working. When I had bad side effects I rarely admitted them, because I didn't want to risk cutting down dosages. Fortunately my blood counts never became critical. I ate well on the weeks when I didn't have chemo, which is why I gained almost 50 lbs overall. I also had read that chemo is most effective the earlier it is taken during the day, mine was usually given before 8 am (partly as a request of mine, and partly because the clinic really wasn't supposed to be treating me anyway). I had treatments on friday or saturday morning -- giving me a couple of days to recover so I could go to class monday morning.
It's been almost 20 years. For a while I had bone and brain scans every year and then refused to get them any longer. After chemo I had mammograms and pap smears every three months, switched to six months, and for a long time, more-or-less get them yearly. I have had several scares, microcalcifications, benign lumps, and dysplasia; I have lost count of the biopsies. The cytoxin messed up my bladder and they had to go in and 'scrape' it to remove scar tissue; I still have problems. I have a weather chest from all the scarring, I now know when a weather front comes through. Let me tell you, unlike an weather toe, it can be embarrasing to clutch your breast when it aches. However, I haven't had a single cavity in my mouth since first being diagnosed with CA -- so I guess you could say that there was ONE silver lining in all of this.
I still panic after all this time, whenever I don't feel well, or if some medical test doesn't come out right... and I still say, that becoming ill is one of the worst things that can happen to hypochondriacs. It confuses us. I am needle phobic, have fibromyalgia,and high cholesterol. But what the heck, I'm still here, my body still functions, and life goes on. I recently found a thickening in my other breast, and hope it's benign, but even if it isn't, I have had a pretty good run. I know I have been very lucky.
I don't know if my story will help anyone, I see they no longer use the protocol I was on. Knowing that there are long term survivors may help y'all. Personally I think family, friends, a sense of humor, and a touch of anger also helps.